Advocacy: A Parent's Gift

Elliot's Christmas illness has quickly turned for the worse. He is now in the hospital, hooked up to IV's and very ill with the super nasty Rota virus.

My daughter and son-in-law are great parents! They take very good care of Elliot and I am grateful for that. However, they are very young and both have very easy going personalities. Confrontation is not their strong suit, so I dread situations like this week. They are still learning slowly how to advocate for Elliot in a hospital environment.

When most of us take our children to the hospital we assume we are taking them to professionals who know what they are doing. My father once told me, "When we assume something it makes an a** out of u and me." No truer words were ever spoken except the words of my Mother, " Doctors have practices for a reason, they are practicing medicine because the don't have it quite right yet."

I am not here to point fingers or to tell you who I think is right or wrong, but I am disturbed over the things that happened to Elliot this week and I hope someone can learn from our mistakes. This is not a bashing of the medical field. I have great respect for doctors, they have saved my life on more than one occasion. I am not bashing hospitals either as they have an equally important role especially for families with preemies. I am here to say that no matter who the professional is or the position of trust they hold there is not a single person who is more important in making sure our teenie tinys get the right care than their parents and families! We cannot leave it to others. Parents are number 1 when it comes to the care of children. We learned this the hard way this week and it was at Elliot's expense I am devastatingly sorry to say. Poor baby, he trusted us to be his advocates and we let him down.

There is enough blame to go around. Doctors, Nurses, the ER, parents, grandparents; you name a person in Elliot's life and they are probably to blame. I thought I was pretty smart, but this week I have never felt so stupid.

Elliot got sick with the rota virus like I said before. My daughter and son-in-law took him to the ER on Christmas day. They gave him fluids and sent him home with instructions to come back the next day. The day after Christmas he was back at the ER for more fluids and sent home again with instructions to come back yet again the next day. Three days and three trips to the ER. Did it ever occur to any of us to take him to see his primary care physician? No! It did not! We are all so stupid! I have no excuse except that our worry and being in the throws of a crisis made us do dumb things including losing our good sense! To make the matter worse the ER never contacted the Primary Care Physician nor did they ever suggest we take Elliot to see him.

When we finally came to our senses yesterday and took Elliot to see his PCP he was dumbfounded that he was never notified that Elliot had been in the ER. Upon further investigation the PCP is pointing fingers at the ER and the ER is pointing fingers at the PCP. Who is responsible for the breakdown in communication? WE ARE!!! His family. We should have have contacted his doctor the next day. We should have asked the ER to call the PCP. As a grandparent I could claim I have no legal responsibility and my children are ultimately responsible, but that would be a lie. I could have kicked them in the butt and made them make that phone call. I did suggest it. A suggestion in a crisis situation is not enough. My children were so numb with worry that they needed to be smacked with a 2 X 4. and I was too concerned about interfering and stepping on their toes.

As a result of this "comedy" of errors there was a total breakdown in communication and because of it a poor little baby was in horrible pain and suffering for three days until the people he believes will take care of him, the people who are suppose to take care of him got it together enough to get him into the right hands to help him begin to feel better. It turns out that the first words out of the PCP's mouth when he saw Elliot were, "This baby needs to be admitted to the hospital." and "Had I known he was this ill I would have admitted him on Monday!"

Today I looked up the definition of advocate - it means "to speak, plead or argue for; a synonym of support; one who pleads in an others behalf, an intercessor." Elliot doesn't have a voice to speak in his own behalf, so we have to be brave enough and responsible enough to do it for him. We cannot leave it to the professionals. As much as we might like to we cannot abdicate our role to another. I look at Elliot and I am stunned by how brave he has been in his short little life. In 18 months he is so much braver than I will ever be. I owe it to him to at least try to follow his example and truly be a worthy advocate. The best gift I can give him is to be a good support to him and to his parents until they learn to be advocates in their own right. I promised myself yesterday that I would never be guilty of letting him down again.

More articles are coming about advocacy by those who know how to do it. Stay tuned...maybe we can all learn something together!

I'll Be Home for Christmas...

Those words mean a lot of different things to a lot of different people. To the parents of a premature baby it means starting a new life together as a family. To be let out of the NICU before Christmas is the best of gifts. These past few weeks as I have sewn countless clothes for preemies all over the world. I think about all those babies in the hospitals during Christmas and it nearly reduces me to tears.

This week I have come to appreciate that song with a different twist. I am not sure I was prepared for what happened to our family on Christmas Day...

We had grand plans for the holidays. Elliot is getting old enough to know something is going on, although he still has no idea about Christmas yet. At 18 months old he is so fun to watch as he discovers all the new sights and sound of Christmas. His delight at sucking on a peppermint stick with intermittent declarations of pleasure..."Mmmm, Mmmm" he says as he leans in for another lick. He hasn't grown tired of pushing the button on this year's Hallmark creation to make the snowman and penguins dance as he claps his hands and pushes the button again ...and again...and again. His great big smile and the delight in his eyes just melts my heart!

Christmas Eve I made my family a formal 6 course dinner. Prime rib and Chocolate Lava Cake were among the tantalizing taste sensations on the menu. (I have been a personal chef in another life.) We had a delightful dinner, opened our presents of new pajamas and piled into the car to go look at Christmas lights in our area. The scene was doubly delightful against the backdrop of new snowfall a few days earlier. I looked around at my family all singing Christmas carols thinking that it doesn't get any better than this!

When we arrive home we watched a DVD about the birth of Jesus called "Joy to the World" and then my dear daughter, her husband and sweet baby went home to plan for Santa's late night visit. They planned to come again in the morning to unwrap the rest of the Christmas presents.

Elliot was thrilled with his Tickle Me Elmo! He watched it with delight and squeals of laughter as long as it didn't come too close. If Elmo rolled his way he backed up saying "Ooooo!" He took to opening his presents like a pro and loved tearing the paper as if he had always known how! He even started helping everyone else open their presents too! At one point I looked down at my pile of presents and saw his blonde, fuzzy head and the distinct sound of rrrripppp, followed by a big mischievous grin. We were all having so much fun!!

Then the unthinkable happened... As their sweet family headed home for showers and then to BJ's dads house, Elliot began violently throwing up. He continued to be sick every 10 minutes for the next four hours. A frantic call from my daughter with a plea for help. A call to the doctor confirmed he needed to go to the hospital. Suddenly, everything changed. What started out to be a wonderful day took a horrible turn for the worse.

There comes a point in every preemie parent's life when it finally all comes caving in on you. Christmas day was THE day for my daughter. When she got to the hospital she just started crying uncontrollably. She had reached her limit. I don't know if it was because of all Elliot has been through or that it happened on Christmas. So many expectations and plans that just were not going to happen now with a baby so violently ill. It was probably all of it. But she lost it. My daughter has been so brave for so long I am surprised it took her this long to break down.

Elliot did come home and he spent the rest of Christmas day with parents...with an IV in his arm and a return visit scheduled for the next day. He was diagnosed with Rotavirus. Nasty stuff this virus - it is bad news for a healthy baby, never mind a preemie of tiny size. It can take 5 to 10 days to get over. With Elliot's petite size of 15 1/2 pounds no wonder they are taking precautions, but my daughter intuitively senses the danger her baby is in once again and it is too much to think that he has once again come so close to death's door. "Will he escape again?" is probably the only question on her mind and it is way too hard to address that question ...so many times.

The truth of the matter is that as long as Elliot is so small we are and will be forced to take a close look at his mortality from time to time. For all of us it is becoming as familiar as an old friend who unexpectedly stops by for a visit.

I am also amazed at how patient this little one is with his calling as a preemie. After he stopped throwing up and got a bit of his appetite back he tired quickly of Pedialyte and wanted something a little more substantial. So he began frantically signing the words "milk" and "cracker" and when his parents refused his request he resorted to the only plea he knows by following it with the sign "please?" When he was refused he dropped his head onto his daddies shoulder sobbing and pounding his fist. After a few minutes at an attempted fit he fell asleep exhausted; too sick and too tired to throw a proper fit. Poor baby!

After the return trip to the hospital he is sent home again with the IV intact for one more day... just to make sure. For me this has put the holidays into perspective. It wasn't the Christmas we planned on or hoped for but at least now he can have his milk (diluted) and crackers! The simple pleasures of an 18 month old. For the rest of us...at least he is home for Christmas!